For Healthcare Providers

Patient Recommendations

In general, many healthcare providers are not adequately prepared to diagnose, manage and treat patients with a tick-borne disease.  Patient experience research results with nearly 1000 participants, peer-reviewed research studies, and the United States Tick-borne Disease Working Group's report to congress in March 2023 call for the urgent need for healthcare providers to become more educated about tick-borne diseases. The longer a tick-borne disease goes undiagnosed, the likelier a patient will have chronic effects.  

A misdiagnosis leads to unnecessary emergency room visits, ineffective treatments, and increased healthcare costs. To improve the quality of care and health outcomes for patients with a tick-borne disease, healthcare providers should integrate these recommendations into their clinical practice.  Fifteen recommendations were developed through thematic analysis of patient outcome data collected through surveys and interviews.  Patient quotes are included with the recommendations.  More quotes and resources will be provided soon.

"If only my physicians knew the signs of Lyme and co infections, I would not have suffered decades without a proper diagnosis."

There are over a dozen tick-borne diseases in Virginia.  Check out our Tick-borne Diseases in Virginia page or the Virginia Public Health Department's flyer on Ticks and Tick-borne Diseases in Virginia and educate yourself about the most common types of tick-borne diseases in Virginia.  

Not in Virginia? There are ticks and tick-borne diseases reported in all 50 states in the United States and most countries around the world. Review your country and region's most reputable public health sources and be informed.  When tick-borne diseases are not diagnosed early, they can lead to unnecessary pain and suffering for patients and families, as well as unnecessary doctor visits, medical tests, and healthcare costs.  

“Know everything about all TBDs and co-infections to help your patients”

2. Learn more about tick-borne diseases and co-infections.

“Consider continuing education in this field of study. The field is lacking many knowledgeable providers” 

""Become familiar with the newest ICD codes" 

Healthcare providers  need to educate themselves on diagnosis and treatment of Lyme and other tick-borne diseases. The Global Lyme Alliance offers free continuing medical education and accredited continuing education on-demand webcasts on diagnosing and treating Lyme disease and other tick-borne disease. 

3. Ask your patients about possible tick exposure.

"I was never once asked if I was bitten by a tick"  

"During the first visit, ask your patients about outdoor work, hobbies, recreation, travel, and if they could have come in contact with a tick.    

"Ask the patient if they may have been bitten-especially during active tick season"

"Ask questions on ones background...and where they live and daily activities”  

"Ask about outdoor habits and hobbies" 

4. Test early and test for co-infections.

"Ticks can carry multiple diseases so it is common that people will have multiple infections.

One in three participants from a patient experience survey reported having at least one tick-borne co-infection.  If a patient tests positive for one tick-borne disease,  consider additional testing or a clinical diagnosis for potential co-infections. In Virginia, Bartonella is a common co-infection in patients with Lyme disease.  

Tick-borne disease tests have an approximately 50% false negative rate.  In Virginia, under Title 32.1-137.06, health care providers are required to provide patients with a notice together with Lyme disease test results that states:  PATIENTS UNDERGOING A LYME DISEASE TEST SHOULD BE AWARE THAT LYME DISEASE TESTS VARY AND MAY PRODUCE RESULTS THAT ARE INACCURATE. THIS MEANS A PATIENT MAY NOT BE ABLE TO RELY ON A POSITIVE OR NEGATIVE RESULT. HEALTH CARE PROVIDERS ARE ENCOURAGED TO DISCUSS LYME DISEASE TEST RESULTS WITH THE PATIENT FOR WHOM THE TEST WAS ORDERED. 

5. Discuss all patient symptoms and make a clinical diagnosis.

"Remember not everyone will have the bulls-eye rash" 

"Listen to every symptom even if it doesn't seem to fit the profile"

If patients test negative, but have symptoms, consider a clinical diagnosis. Tick-borne disease tests are not reliable. In Virginia, under Title 32.1-137.06, health care providers are required to provide patients with a notice together with Lyme disease test results that states:  PATIENTS UNDERGOING A LYME DISEASE TEST SHOULD BE AWARE THAT LYME DISEASE TESTS VARY AND MAY PRODUCE RESULTS THAT ARE INACCURATE. THIS MEANS A PATIENT MAY NOT BE ABLE TO RELY ON A POSITIVE OR NEGATIVE RESULT. HEALTH CARE PROVIDERS ARE ENCOURAGED TO DISCUSS LYME DISEASE TEST RESULTS WITH THE PATIENT FOR WHOM THE TEST WAS ORDERED. 

6. Believe your patients and believe that tick-borne diseases exist.

Never tell your patient it is all in their head. They are often experiencing a variety of symptoms  that are difficult to describe.  Many symptoms also mimic other common diseases and conditions so they can be easily misdiagnosed. Remember to ask your patients about possible tick exposure and consider tick-borne diseases in your initial consultation and diagnosis. 

"Believe what patients tell you, no matter how unbelievable it sounds"

7. Treat each patient individually. Every TBD patient's experience is unique.

"Reactions take different paths with different people“ 

"No two people are alike and everyone reacts differently”

"Design therapy programs based on the individual"

8. Really really listen.

“It took forever to find a doctor that would listen” 

"Listen to what the patient is asking and telling you"

"Let them know you are listening to them"

9. Show compassion and empathy.

"Approach the relationship as a collaboration with kindness"

"Always listen with empathy"

10. Think outside the box.

"Be willing to investigate and treat until all symptoms are resolved"

"Try new things when what you are doing doesn't work"

"Consider a combination of traditional treatments, alternative therapies and nutritional changes. "

11. Design individualized care plans in collaboration with your patients.

"Reactions take different paths with different people“ 

"No two people are alike and everyone reacts differently”

"Design therapy programs based on the individual"

"Help them by treating the whole body and helping with nutrition"

"Help patients navigate dietary changes"

12. Treat the whole person (patient). 

Take a holistic approach to treating patients with tick-borne diseases.  

13. Provide resources and referrals to specialists.

"Provide valuable resources"

"Refer patient to a specialist in the specific TBD"

14. Check in and follow up.

"This isn't over once you are diagnosed. Continue to follow up and remember in the future they had a tick-borne disease"

"Continue to check in on us throughout our treatment"

15. Stay current and review the latest research.

"Stay up to date on research" 

More information and resources will be posted soon.